Patient participation
[1][a] A nuanced definition of which was proposed in 2009 by the president of the Institute for Healthcare Improvement, Donald Berwick: "The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care"[3] are concepts closely related to patient participation.
Researchers warn that there are "three different types of representation" which have "possible applications in the context of patient engagement: democratic, statistical, and symbolic.
Examples of artificial intelligence (AI) technology used in healthcare include IBM's Watson Health (now Merative), which is intended to assist in the diagnosis and treatment of difficult illnesses or disease.
[citation needed] The success of shared decision making and partnering with consumers including patients has been suggested to be related to addressing power imbalances.
[19] When solicited for participation by policymakers and industry leaders, patients can influence health policy, and both groups benefit from collaboration on goal-setting and outcome measurement.
Similarly, foundations, nonprofit organizations, and government agencies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting.
[27] Patients can add value to HTAs by providing real world insights (e.g. implications of benefits and side effects, variation in clinical practice)[28] highlighting outcomes that matter, addressing gaps and uncertainties in the published literature,[29][26] and contributing to the value construct that shapes assessments and decisions.
Facey KM, Hansen HP, Single ANV) bringing together research, approaches, methods and case studies prepared by 80 authors.
It suggests that patient participation in HTA depends on two-way communication and is a dialogue for shared learning and problem-solving.
Sociologist Andrew Webster sees the problem as "a failure to recognise that evaluation is a contested terrain involving different sorts of evidence related to different sorts of context (such as the experimental derived from clinical trials, evidential, derived from existing clinical practice, and experiential, based on patients' experiences of an intervention".
[38] Kelly et al. explain (with their original citations shown here in brackets): "From the moment Archie Cochrane linked questions of clinical effectiveness to cost effectiveness [17] and cost utility analysis was chosen as the basis for assessing value for money, [Evidence-Based Medicine] EBM and HTA have been framed within the utilitarian philosophical tradition.
[40] Workshops in Denmark and Austria have resulted in calls to action to reinforce patients' role in SDM and health advocacy.
[41][42] Furthermore the Danish workshop reported that the European Medicines Agency would be "measuring the impact of patient involvement", this being crucial to establishing credibility.
[44] In Austria, a bibliography inter alia resulted from the most recent event in a workshop series continuing through 2019 entitled "Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship held from 10–16 March 2017.
[49] In Norway, Nilsen et al. were critical of patients' role in health policy and clinical guideline development in their Cochrane Intervention Review.
The Chancellor of the University of California, San Francisco, for instance, wrote an editorial in Science Translational Medicine calling for an amendment to the social contract to boost patient participation, citing a historical precedent: "We need only look back to the human immunodeficiency virus (HIV)/AIDS epidemic during the 1980s to experience the power of patient advocacy combined with the dogged pursuit of scientific discovery and translation; clearly, motivated patients and scientists as well as their advocates can influence political, scientific, and regulatory agendas to drive advances in health.
[55] A second success story is that of the patient John W. Walsh, who founded Alphanet, which has funnelled tens of millions of dollars into research on chronic obstructive pulmonary disease or COPD.
Other ways electronic health records can enhance patient participation include electronic health records that alert physicians to potentially dangerous drug interactions,[63] reducing time to review a patient's medical history in an emergency situation,[64] enhanced ability for managing chronic conditions like hypertension,[63] and reducing costs through increased medical practice efficiency.
With more and more evidence suggesting that the most effective treatment models involve specialized, multi-faceted approaches, and require a variety of materials and effort on both the physician's and patient's end.
Live videoconferencing appointments have proven effective, especially in the field of mental health, and can be especially significant in providing services to low resource, rural communities.
[67] This boom in production has led to a developing concern regarding the amount of research and testing the application undergoes before going live, while others see promise in patients having greater access to treatment materials.
[67] mHealth has been used in patient participation in many fields of healthcare, such as in the management of chronic illness (COPD,[70] Diabetes, etc), and oncology.
During the epidemic, AIDS activists argued not only for new clinical trial models, but for the importance of additional social service groups to support a wider range of potential human subjects.
[84] Due to this increased interest, studies have been done to assess the benefits and risks of patient participation and engagement in research.
[85] For risks, it has been proposed that the inclusion of patient participation may lead to extended research times and increased funding for clinical trials, while also providing limited evidence that patient-centeredness decreased the ordering of low-value tests.
[94] Patients have a new resource to help them navigate the clinical trials landscape and find understandable summaries of medical research in the OpenTrials database launched by the AllTrials campaign in 2016 as part of open data in medicine.
"Key to making precision medicine mainstream is the ongoing shift in the relationship between patients and physicians" comments N. J. Schork from the Venter Institute in Nature.
He cites as reasons for this development a growing interest in 'omics' assays and cheap and efficient devices that collect health data.
[97] With cancer being a prime target for precision medicine, patients are increasingly being recruited to participate in clinical trials to help find cures.
[98] An activist has reported that "patient involvement in research has also become a political goal, strengthened by the joint declaration of the German, Portuguese and Slovenian Trio Presidency of the Council of the EU in September 2021".
